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March 27, 2015

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March 27, 2015

My name is Amy, and my husband Todd and I have three children- Caitlyn, Christian, and Caleb. Todd was diagnosed with ALS on August 9, 2013, and we have been fighting as a family since 2008 when the symptoms first began.

How this has impacted our lives has knocked us to our knees. At the
beginning we were so overwhelmed, we didn’t know what to do or what to think. Then we put our positive thoughts, our hope, and our belief that one day, and one day very soon, there would be a cure and a miracle placed not only on our family but upon the thousands of families that fight ALS every single day.

My daughter Caitlyn is 9, and I wanted her to say to say a few words on how ALS has impacted not only her, but her two brothers:
“Well my dad used to tell us stories and talk to us, but ALS has taken away his voice, which will come back I know. And no matter what ALS does to my dad, he will still be the same funny guy we know. We just have to stay strong and believe that miracles and a cure will come.”

ALS Worldwide was the organization that reached out to us at the beginning when we were in a whirlwind. We had no idea what to do, what ALS was. The only thing we were hearing from neurologists was, “I’m so sorry, this is a terminal illness and there is no cure.” Steve Byer reached out to us, and got on weekly Skype calls to answer all of our questions, and gave us so much hope and information on so many things that we could do to try and keep Todd as strong as we can. We’ve followed his advice, and we will continue to do that.
March 20, 2015

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March 20, 2015

I live in Durban, South Africa with my husband Charles and our four children. I was diagnosed with ALS/MND in February 2014, after undergoing numerous tests that eventually lead to this diagnosis. Understandably it was a great shock for the entire family and has impacted our daily lives quite considerably.

I am fortunate enough that my symptoms have started in my legs, and at the moment I’m feeling weakness in my back which is affecting my day-to-day mobility and the ability for me to do normal day-to-day tasks. I am very lucky that I have an extremely supportive family who have gone through this journey with me and supported me with love and caring.

We have found it extremely difficult in South Africa to find medical help as not much is known about the condition in South Africa. Very luckily for us, just going through the internet, we managed to find ALS Worldwide, who have been incredible in their support, their empathy, their caring, and their information in terms of possible medications that could help us. More than anything, we feel extremely grateful for the fact that they have given us hope.

At this stage we are feeling very positive with the route we are taking in terms of treatments. So far we are doing pretty well. We do appeal to you to support ALS Worldwide as there is no other organization who offers this kind of support to families in our situation who are desperately looking for some kind of light at the end of the tunnel, and to stay as positive as possible and that is the incredible support we have got from Stephen, Barbara, and Sarah. They have been unbelievable and unstinting in their support. We Skype with them once a month and have found them unbelievable in their help and their caring for us.
March 20, 2015

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March 20, 2015

Hi, my name is Ryan Walker. I live in Kwazulu-Natal, South Africa with my wife and 2 daughters. I have been living with Motor Neuron Disease for two and a half years. ALS affects my family and me on a daily basis, from the moment we wake up until the moment we fall sleep. I lived a very active lifestyle. I’ve always tried to be healthy and fit and it’s getting progressively harder and harder to do that. At the moment my speaking, eating and breathing are fine, but my limbs are continually a challenge and is something that I find relentless and getting progressively worse.

ALS affects me in a thousand ways every day. I’m struggling to write, cutting up food is a challenge. Picking up my children, holding them, walking down the stairs. These are all a massive challenge and are getting harder each day. Getting dressed in the morning takes me half an hour instead of five minutes. Getting around my lands on the farm is a massive struggle. Tripping over the smallest step is something that is beginning to happen more and more often. Negotiating with my kids and chasing them when they’re trying to run away. It’s not all bad, but it’s not all good.

ALS Worldwide have been an incredible support structure for us. We were introduced to them through a mutual friend who is on the same journey. They’ve provided hope, they’ve provided guidance, and they’ve been a pillar of strength that we have time and again been able to rely on. Steve, Sarah, and Barbara Byer have been incredible. They’ve given us guidance on medication that they believe can assist ALS. They’ve given us guidance with stem cell therapies and the promise that they hold. We often call on them for guidance and they are always there for us, even on Sundays through Skype sessions. We’ve become very reliant on them.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2015

March 11, 2015

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Review from Guidestar
March 11, 2015

My name is Tony Papoulias. I am a 62 year-old pensioner of Greek origin. Our Calvary started as early as the beginning of 2000 when my wife Annie observed with a feeling of awe the first bulbar symptoms settling on a day-to-day basis. Being a fast progressor, she was soon diagnosed with ALS at the age of 42 in Birmingham, UK. Our two daughters, Anastasia and Demi, aged 18 and 16, had to face the inexorable reality of their mothers imminent death. As a result, both of them great up and matured really fast.

It seems that it was God’s divine plan of my getting in touch with the Byer family in the summer of 2003. Needless to say, this very fact marked the beginning of a true friendship. And according to a well-known motto, “A friend in need is a friend indeed.” Never will I forget how much we profited from the precious pieces of advice offered or the unique way we were respected and treated. That is the reason why I do consider myself to be an extremely lucky man to have made their acquaintance.
March 11, 2015

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Review from Guidestar
March 11, 2015

Hi, my name is Keith Johnson from Pineville, Louisiana, and I was diagnosed with ALS a little over two years ago in November of 2012. When I first got this news I was devastated. The doctor told me I had two to five years to live, during which time I would become completely paralyzed, not being able to speak, eat, or eventually to even breath. I was immediately concerned for my family, wondering what kind of burden I would become to them

I’m now more optimistic than I’ve ever been about the future. Part of the reason for my optimism is my association with ALS Worldwide. Early on in my battle with ALS, I was searching the internet for treatment options and I ran across their website which had information that I was curious about. I sent an email to Stephen Byer, not really thinking I would ever get a response. Not only did I get a response, but he set up a Skype video call with me and talked to me about my health, when I was diagnosed, what I was doing treatment wise, and just provided someone to talk to that completely understood what I was going through.
March 11, 2015

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Review from Guidestar
March 11, 2015

Hi, my name is Snatak Eymundur Kjeld, and I live in Iceland where I own a music store. I was diagnosed with ALS/MND in 2004. Right now my speech has deteriorated and I am not able to use my hands so much, but thankfully I still have full use of my legs. I really value the support my friends at ALS Worldwide have given me. The first time I spoke with Steve and Sarah from ALS Worldwide, I received more information in a two-hour conversation than in years of researching by myself.
March 9, 2015

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March 9, 2015

My wife Toni and I received my ALS diagnosis in October of 2011. Along with that news, our neurologist (at the time) was less than encouraging with statements like “If you want to travel anywhere, you’d better do it now.” We spent the next few months in a tailspin as we quickly learned that resources for people in our situation were, at best, very limited.

Finally, after countless hours of scouring the barren desert of ALS information, Toni found the oasis…Steve & Barbara Byer / ALSWW.

It was a joyous day on March 29, 2012 when Toni “encouraged” me to participate in that first Skype call with Mr. Byer. Since that time there have been numerous calls and emails where we’ve received information, advice and encouragement. Although my ALS has progressed, we are confident that the advice and involvement in various drug trials have given us many more quality days than we would have otherwise had. With that being said, the greatest gift we’ve received from Steve & Barbara is HOPE.

Many, many thanks to ALSWW for being our trusted advisor on this journey.
March 9, 2015

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Review from Guidestar
March 9, 2015

I was diagnosed with ALS in 2004. I immediately went online to research possible treatments, to no avail of course. I joined forums, where I heard about a drug with possibilities. Iplex is a growth hormone approved by the FDA for small-stature children. One would think it would be a no-brainer for the FDA to grant ALS patients’ access to Iplex, right? Well, of course the FDA has no brains, and so began our friendship with Barb and Steve.

Their son, Ben, who also was afflicted with ALS, was also on a quest to obtain the use of Iplex. Steve began the search for us. I had contacted the Italian Ministry of Health, as Iplex was being supplied by Insmed the American manufacturer to about 80 Italian ALS patients. We formed a multinational group called Team Iplex and staged a demonstration in front of the Capitol in DC. Steve and Barb were instrumental in guiding those of us who attended. Unfortunately, Ben had passed away a few months before.

Barb and Steve have devoted their lives in honor of Ben for the rest of us who struggle with ALS. They travel tirelessly around the world, uncovering scams and shysters, as well as exploring possible viable treatments for ALS patients. They have valuable notable medical connections. They also spend time visiting the families and patients at their homes, or in our case, where we happen to be living at the time. The Byer’s are a fount of knowledge and whenever I come across a “new” treatment, I always fire off an email to them asking if it is valid. Even our sons, 25 and 23, and my mom ask if we’ve contacted Steve if they read or hear of something. Barb and Steve aren’t just ALS friends; they are a big part of our family.

Debbie and Bill Gattoni

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2015

March 5, 2015

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Review from Guidestar
March 5, 2015

In the couple of years only I have known Steve and Barbara Byer, I have seen them tirelessly circumvent the globe again and again to carry the flame of hope of ALS Worldwide to so many patients and their families in the far corners of the globe. In ALS, as in most neurodegenerative conditions, care-takers physicians, neurologists from around the world are often at a loss to alleviate the patient’s struggles with the illness or symptoms. In fact, with limited pharmaceutical resources to draw from, they often fail to establish the appropriate ‘medical protocol’ which has become synonymous with the successful treatments of cancer or cardiac diseases today. With so much of the published medical research in neurology based on anecdotal evidence, often conflicting, the asymmetry of information between patients and physicians or indeed between physicians themselves has never been greater.
ALS Worldwide was able to bridge this information gap for my family - and helped us after many unsuccessful attempts to curb one of the most debilitating symptoms of our patient (pseudobulbar palsy), by pointing us to a targeted drug at the time still under FSA review in America. This drug treated the symptoms fully, much to the wonder of the patient’s physicians and neurologists...


Yet, accompanying ALS patients and their families through the mazes of diagnosis and treatment protocols is only half of ALS Worldwide’s wide ranging mission. Each of their patient visits across America or abroad affords an excuse to inspect and survey the leading neurology research centres and hospitals from such places, identifying along the way some of the most interesting/upcoming research. I believe ALS Worldwide, along with other Non-Profit Organisations advocating for a faster delivery of treatments to patients, plays an important catalytic role for tomorrow’s cures to be developed today.
For these reasons, as well as Steve and Barbara Byer’s tireless and selfless personal commitment to fight a disease they couldn’t defeat in their own family, I chose to support ALS Worldwide.
September 10, 2013

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Review from Guidestar
September 10, 2013

I have never met anyone like Stephen and Barbara Byer and ALS WORLDWİDE whole my life. When I first talked with them . I really felt the sincerety like even more than any of my relatives. They were the only one who really understood our situation. Our feelings about not being able to do anyhing about our most loved one,my mum, was killing us day by day but they gave such great help and support that we could continue our life.they made us obtain symptom relieveing meds that were really helpful. You feel that you are not alone and there is hope and there is something to do.This is very important because if you lose your hope , you löse everthing as this is the worst diagnosis that the human being can take I think.
I also met them in İstanbul,they were really helpful and kind. We spent several hours together but I haven't seen any sign of that they got bored of our several questions that we hadn't got reply from anyone until then .They were so friendly and sincere. We really had great time together. They also spoke with my mum on Skype and fortunately directed us to the doctor Merit Cudkowich from MGH. They helped us with the all contacts and procedures step by step.By means of them,we got the courage to see doctor abroad. And I think this is the most true decision we have taken so far.
We had some problem at the biiling department at MGH. We were really got shocked and stressed. They were the first people I called without hesitation and again only people who really relieved us. I don't know what I could do without their assistance.By their support ,we could turn back to our country in safe.Thanks to God ,we met them in this really desperate situation . We are very lucky and we will be debtful and grateful to them throughout our life.And they have never charged anything from us for their service so far.



Yasemin Akarsu


More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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